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Recognising symptom patterns will aid early diagnosis of dementia

Professor Steve Iliffe discusses how both general practitioners and commissioners can ensure the national dementia strategy is implemented in primary care

Dementia is a clinical syndrome characterised by a cluster of symptoms and signs including difficulties in memory; changes in thinking, reasoning, and mood; disturbances in language; and impairments in activities of daily living. The national dementia strategy, published in 2009,1 aims to improve the ability of GPs to identify patients with dementia syndrome at an early stage, refer them to diagnostic services, and provide them with continuing support.1 This article should assist GPs with implementing the national dementia strategy, both as clinicians and as practice-based commissioners.

The scale of the problem

The Dementia UK report has estimated that about 683,500 people in the UK currently have dementia syndrome and the annual cost of their care is £17 billion,2 which is more than heart disease (£4 billion), stroke (£3 billion), and cancer (£2 billion). Dementia is one of the main causes of disability in later life; in terms of global burden of disease, the World Health Organization estimates that dementia contributes 11.2% of all years lived with disability. This is higher than stroke (9.5%), musculoskeletal disorders (8.9%), heart disease (5%), and cancer (2.4%).2 The burden of the disease makes it a clinical priority and the costs of care make it a matter of concern to commissioners.

A GP with 2000 registered patients in an average demographical area will have 12–15 patients with dementia syndrome of some form, approximately half of whom have not yet been formally diagnosed. This GP will meet one or two new cases each year, although as the population ages, both the incidence and prevalence will increase. Such small numbers mean that GPs will not be overwhelmed by dementia syndrome cases, even though each case can be complex to manage.

Recognising dementia

The symptoms of dementia syndrome tend to develop slowly, and may be attributed to ‘normal’ ageing. This slow development distinguishes this condition from acute confusion in older people that is caused by infections, biochemical disturbances, drug adverse effects, or excess alcohol. The other dominant feature of dementia syndrome is its inevitably progressive nature. The length and course of the illness may vary by sub-type (e.g. Alzheimer’s disease, dementia with lewy bodies, or vascular dementia) but the outcome does not.

Early recognition is not easy because of the variable onset of the dementia syndrome, which emerges through the personality of the individual, sometimes without a clear demarcation until late in the disease process. Patients, families, and GPs may all be reluctant to diagnose dementia syndrome because it is a serious and largely unmodifiable disease, which still carries the burden of stigma.1 Physicians may hesitate to label a patient, and family members may gradually take over social roles from the patient, protecting him or her from difficulties in daily life, but also delaying formal diagnosis of the disorder by offsetting impairments.

In its simplest terms, dementia syndrome is a problem characterised by a triad of changes and clinical judgements should hinge on them. They are:1

loss of memory

loss of another aspect of cognition

impairment of everyday life.

Memory loss can be very variable, and alone is insufficient to reach a diagnosis. Loss of executive functions, like planning activities or interpreting instructions, may be more obvious. Understanding the pattern of changes that occur in early dementia may help clinicians to recognise the syndrome more easily. Table 1 shows the six key aspects of behaviour that indicate loss of cognitive function.3

Table 1: Indications of loss of cognitive function3

Healthy

Mild dementia

Memory

Occasional lapses

Impaired by loss of memory for recent events

Orientation

Full in time, space, and person

Some variable disorientation in time and place

Judgement and problem-solving

Solves everyday problems

Some difficulty with complex problems

Outside home

Independent functioning

Engaged in some activities but not independently, may appear 'normal'

At home

Activities and interests maintained

More difficult tasks and hobbies abandoned

Personal care

Fully capable

Needs some prompting

Informant history

The diagnosis of dementia syndrome is a clinical one, and there are no definitive tests in primary care.2 The key factor in making the diagnosis is taking a history from an informant. Consultations regarding failing memory or changing behaviour commonly involve a third party, therefore, GPs can often gain the key information quickly. Table 2 suggests some questions to ask during the consultation.4

Table 2: Questions to ask when taking a clinical history4

Does the patient have more trouble remembering things that have happened recently?

Does he/she have more trouble recalling conversations a few days later?

When speaking, does the patient have more difficulty in finding the right word or tend to use the wrong words more often?

Is the patient less able to manage money and financial affairs (e.g. paying bills, budgeting)?

Is the patient less able to manage his or her medication independently?

Does the patient need more assistance with transport (either private or public)?

Should screening for dementia be performed?

Pre-symptomatic diagnosis (before impairment) through identification of ‘mild cognitive impairment’ is controversial, as is population screening for symptomatic cognitive impairment. There is no effective disease-modifying treatment for cognitive loss, and it is not easy to distinguish between ‘mild cognitive impairment’ and the changes in memory and thinking that occur in normal ageing. Neither NICE nor the US Prevention Task Force recommend screening for dementia syndrome.5–7

It is useful for GPs to adopt a different perspective and aim to identify dementia when it becomes problematic for the person and their family. This is ‘timely’ diagnosis. The benefits of timely investigation and diagnosis when impairment first appears, include:1

identification of treatable physical and psychiatric causes

treatment of co-morbid conditions

initiation of psychosocial support

instigation of symptom-modifying medical therapies.

Investigations

Current guidance from NICE recommends that GPs perform some routine investigations (blood screening, and possibly a chest X-ray and electrocardiogram), before referring the patient for specialist assessment, preferably by a psychiatrist specialising in older patients.5 The blood tests required are full blood count, urea and electrolytes, and thyroid function tests to detect co-morbid conditions such as anaemia due to B12 deficiency or renal disease and exclude reversible causes (e.g. hypothyroidism). Syphilis serology is not recommended as a routine test but can be justified if the apparent course of the syndrome or the presentation is atypical.6

Cognitive function tests are never diagnostic of dementia syndromes but can add evidence to a clinical assessment:8

The Mini-Mental State Examination (MMSE) is widely used by specialists. It is scored out of 30 (a score of <25 is suggestive of dementia), but is influenced by the person’s level of education, can take up to 20 minutes to complete, and may not be practical for use in primary care

The General Practitioner Assessment of Cognition (GPCOG) takes 5–7 minutes to complete with questions for both the patient and family carer

The 6-item Cognitive Impairment test (6CIT) was designed for general practice. It is brief and convenient as it is built into the leading software used by primary care

The Abbreviated Mental Test Score (AMTS) is quick and easy to use, and is widely used in hospital medicine, but it is probably the least sensitive and specific instrument

Two other cognitive screening tests, the Mini-Cog Assessment Instrument (MAI) and the Memory Impairment Screen (MIS), have been found to perform as well as the MMSE and are more appropriate for use in primary care.

Depression and dementia

People with dementia syndrome have high rates of depression and individuals with depression often have prominent complaints of memory loss and other psychological deficits that can mimic dementia.2 Depressive symptoms may develop early in the dementia trajectory, as the individual becomes aware of their failing memory and capacity to reason, and treatment with psychological therapies or antidepressants should be offered.2,6

Referral decisions

General practitioners often have legitimate reasons to seek a specialist opinion:

They may be unsure about the diagnosis and need an expert assessment6

They may suspect Alzheimer’s disease and want this confirmed so that their patient can be offered cholinesterase inhibitor medication6

Family members want a consultation with a specialist—this will become increasingly common as the public profile of dementia syndrome rises.

The disease trajectory

There is a tendency to over-estimate the timescale of dementia syndrome, and see it as a long-term condition. One review suggests that individuals who develop Alzheimer’s disease (the commonest form of dementia) live for an average of 7 years, while those who develop vascular dementia live for just under 4 years. More recent studies suggest that people with dementia survive only 4.5 years from symptom onset and 3.5 years from diagnosis. The latter low figure reflects late diagnosis, but even survival time from onset of symptoms is low, giving the management of dementia a palliative-care quality. Efforts to promote early diagnosis, if successful, will increase both survival time and time in contact with dementia services.9–11

The steady fall in the number of long-term care places available for people with dementia, together with the rising number of older people in the general population, will lead to an increasing number of frail older people requiring complex care packages if they are to continue to live independently and either postpone or avoid moving into a care home. Commissioners need to estimate the effects of ageing on the incidence and prevalence of dementia syndrome, and the likely costs of this demographic shift to their local health economy.

Providing psychosocial support

Cognitive behavioural therapy (CBT) may be helpful especially for overcoming catastrophic thinking and depressive withdrawal. Focusing on a patient’s beliefs and attitudes about dementia syndrome, exploring unhelpful or inaccurate beliefs, and providing accurate verbal and written information has been shown to help with accepting the diagnosis. Case studies of CBT use in patients with dementia syndrome have demonstrated how a person-centred approach can help alleviate fears associated with other people ‘finding out’ the diagnosis, rapid deterioration in abilities, socially embarrassing behaviour, and a loss of involvement in care planning.12

One simple technique that GPs can adopt during consultations is ‘reframing’.12 Reframing dementia syndrome as a disability that can be accommodated shifts the emphasis for the patient and their carers from being preoccupied with the diagnosis and trying to avoid being perceived badly, and encourages understanding of the frustration felt by people unable to perform daily tasks. Patients are guided to focus on things they still can do, rather than the things they have problems with.12

Dealing with behavioural and psychological symptoms

At some point during their illness, almost all patients with dementia syndrome will have behaviour that challenges those around them. A specialist opinion is often needed when challenging behaviour persists or intensifies, but GPs can clarify the potential causes of challenging behaviour using the mnemonic ‘PAID’ as a diagnostic aid, see Table 3.

Table 3: Using the ‘PAID’ mnemonic as a guide to understanding behavioural and psychological symptoms in dementia

P Physical

Physical problems can be a cause of behavioural disturbance. For example, the pain from osteoarthritis can make somebody more aggressive than usual, or they may be wandering more in an attempt to relieve pain. Infections can also cause behavioural disturbances in people with dementia. It is important if someone has behavioural disturbances that physical causes are excluded.

A Activity-related

Interviewing an informant will help to determine if there are behavioural disturbances that are causing problems for the patient and carer. You may find that the behavioural disturbance appears when the carer is undertaking a particular activity; for example, helping with dressing can create an activity-related disturbance such as aggression in the patient. In this instance it is advisable for the carer to leave the room, in many occasions on return the aggression will have dissipated.

I Intrinsic to dementia

There is some behaviour intrinsic to dementia, especially but not exclusively in the later stages of the disorder. For example, people may wander more or repeatedly stroke another person. Explaining that these behaviours are intrinsic to the disorder will help patients and carers to cope with these problems.

D Depression and delusions

People with delusions or hallucinatory experiences can become behaviourally disturbed. The focus for treatment should be the psychosis rather than the behavioural disturbance itself.

Summary

Practitioners can implement the national dementia strategy by enhancing their understanding of the symptom patterns in early dementia, obtaining an informant history, carrying out a basic work-up, and choosing a simple cognitive function test to complement their clinical judgement.1 Support for patients with dementia syndrome is greatly appreciated by their families, and can be enriched by the use of simple reframing techniques and guides to managing behavioural and psychological symptoms.

Commissioners need to know about the impact of demographic change on their local population as this will determine the demand for dementia services; they should also include an estimate for services associated with earlier diagnosis. Commissioners can support the implementation of the national dementia strategy by promoting professional development in the areas described above.

National Collaborating Centre for Mental Health. Dementia: The NICE-SCIE guideline on supporting people with dementia and their carers in health and social care. Clinical Guideline 42. London: The British Psychological Society, Gaskell, 2007. Available at: www.nice.org.uk/guidance/CG42

National Institute for Health and Care Excellence. Dementia: Supporting people with dementia and their carers in health and social care. Clinical Guideline 42. London: NICE, 2006. Available at: www.nice.org.uk/guidance/CG42

National Collaborating Centre for Mental Health. Dementia: The NICE-SCIE guideline on supporting people with dementia and their carers in health and social care. Clinical Guideline 42. London: The British Psychological Society, Gaskell, 2007. Available at: www.nice.org.uk/guidance/CG42